New to the forum
No formal diagnosis as of yet.
I have suffered from back pain for many years which was initially put down as wear and tear due to my job as a nurse but I was 23 and 26 at the time, two MRI spines done one in 2016 and one in 2019 revealed bulging discs. I had a blood test done for the HLAB27 gene (to rule out ankylosing spondylitis) which came back positive but wasnāt seen by rheumatology as my MRIās were negative for sacroilitis.
Since 2019 things have been getting worse, new symptoms have developed - horrible headaches, jaw problems, muscle spasms in my legs, incontinence, mainly urinary but ever so often there has been the other. I hve been back and forth to my gp who kept putting it down to stress but gave me codeine and pregablin for the pain.
Due to the headaches and visual changes in my left eye I went to my opticians who has diagnosed me with optic neuritis and referred me urgently to opthamology - she spoke to me about MS and links with this.
While I know that not everyone who has optic neuritis has MS or vice versa I do think my symptoms are pointing to a likely diagnosis. I just wondered if anyone had experience of there diagnosis beginning with a visit to opthamology and whether they would do the onward referral to neurology if they felt it was necessary or whether I will go back to my GP? I feel I have lost all faith in my GP now and Iām terrified of what might come.
To quote a neurologistās words to me many years ago: āMS tends to find the optic nerves particularly tasty.ā As you say ON is neither necessary not sufficient to prove MS. It didnāt appear on my menu until I had had MS for some years, for instance, and I know people who have had MS for longer than I have who have never had ON at all. I understand that it is a not-unusual first symptom, though. I hope you get some answers soon.
2000 i was on holiday lost vision temp in left eye. was in brazil saw doctor not stroke see my doctor when i went home. that was waste of time.
2007 i had a VEP test as vision problems were ongoing over time.
VEP test was positive BILATERALLY showing slowing brain to optic nerve. then more stuff over time until 2015, the neurologist did a colour chart test in his office, which i failed, so he decided i should have another VEP test late in the year.
I got the results early 2016 this showed more slowing between the brain and optic nerve and i was finally told I had progressive MS.
hope that helps. You need VEP test really. xxx good luck.
I was diagnosed with MS 3 months ago and optic neuritis was my first symptom that I couldnāt ignore beginning Sept ā20. It began as a āholeā in my left eye vision, took 7+ days to spread completely leaving me with āpixelatedā vision, no pain, I went to the eye clinic via A&E where they shrugged their shoulders and said if it gets any worse then come back but theyā ll refer me for an MRI - they never did.
March '21 during what I now know was a bad relapse, I woke up with āpixelationā across my right eye with no hole, after many arguments with the doctors receptionists I got an appointment with a GP who made me an urgent referral to neurology. The MRI in August showed a lesion behind the left eye, I still need to have conversations regarding my diagnosis and particularly my eyes as its a concern of mine. Both eyes are ok now.
This is only my experience, good luck and I hope you get some answers soon. Xx
Hi there - I have not been diagnosed with MS but have a strong feeling I may have it.
In 2012 (I was 20 years old) I woke up after a night out with double vision and blurryness in my right eye. I thought I may still be drunk! Anyway I went to the hospital just to get it checked out. They sent me to Moorfields eye hospital and after loads of tests, confirmed a diagnosis of optic neuritis. I didnāt even know what MS was. I was referred to a neurologist who explained the link. I then had an MRI scan which came back as normal, so the neurologist explained it was a good sign, but that I would basically be on a watch and wait list as it is usually the first symptom. Fast forward about 4 years and I was pretty sure I had another episode of ON in the same eye. My vision had become noticeably worse for a few weeks, however being 24 years old and terrified of this whole MS thing I didnāt see anyone about it. It resolved and I went on with my life.
I have had other āsymptomsā which may or may not be related over the past 10 years which include, extreme fatigue, memory issues - I used to say to friends and family and say god without you lot Iād never remember my life, bladder and bowel problems (frequent urination, and going inbetween constipation and diarrhoea), frequent pins and needles and feeling like bugs are crawling on my skin, occasional ringing in one ear and a massively reduced sex drive.
Most recently (last week) I was admitted to the hospital with a suspected aneurysm due to an extremely painful headache that came on very suddenly and caused me to go dizzy. After a CT scan and lumbar punctures they came back as normal and I have been referred to a neurologist. Starting around the same time as this headache though and something that is still happening now is quite a large patch of numbness/tingling on my left shoulder blade.
I have no idea if this is all related or just random sequences of events. However I completely understand the worry of having ON and wondering if youāre going to get MS. Iāve dealt with this fear for the last 10 years. From what Iāve read, yes, it can be but itās not always. My advice is keep persisting with doctors and explore every avenue. I probably should have done so sooner but being in my early/mid twenties I wanted to push it as far to the back of my mind as possible. Now coming up to 30 and having a young daughter I realise itās something I must do for the sake of myself and my family.
I wish you all the best, and Iām happy to discuss anything further with you or anyone else as itās a hard discussion to bring up with people who have never experienced anything like this! It helps to talk. X
Thank you all for your replies.
Looking back at my symptoms it does all seem to fit with MS however I realise it can be a long and complex road to diagnosis so weāll see what happens next week! Iāll keep you all posted x
Just an update - so opthamology rang - itās a mild case of ON and they want to see me in 4 weeks to see if it has gone - no treatment as such unless symptoms worsen. Both opthamology and optician have urged me to see my GP and Iām plucking up the courage to ring them tomorrow.
I guess Iām just a bit worried that they will think I have googled the symptoms and made ever everything fit and Iām scared that they will just dismiss it out of hand.
How did you guys find your first appointment went with your Gp before you were referred for further investigation?
Thanks
As both opthalmology and the optician have suggested you see your GP that should put you on firmer ground. Just say that in your opening sentence to your GP, and that they have diagnosed Optic neuritis. Then lead from there onto the fact youve had those other symptoms over time and that as you are aware that there can be a connection with ON and MS you would like to be referred to a neurologist. I tend to think it is better to be honest about your fears (that it might be MS) than skirting around it. I know some people donāt like to mention what is really worrying them, almost from superstition, that by saying it out loud it will make it a reality.
Did you see your GP in the past about those specific symptoms? If they are there on you notes that should make it easier.
I find it odd me. I went blind temporarily in 2000 twice on holiday and back home. My GP was useless i hadnt had a stroke so well it must have been the heat. from 2000 to 2006 late when things blew up in 2007 early i saw neurologist who took a history. he was very interested in my vision issues. i had issues over the years with vision, pain, blurring strange change in colour perceptions no one knew or cared what it was lol.
so i had a VEP which showed demylination in the pathways of the optic nerve bilaterally and my journey began.
Over time i had mri and stuff showing lesions etc, then 2015 another vep and early 2016 the results was worsening and i was diagnosed with PPMS.
i think you need to be referred to a neurologist. You can google symtpoms but your othamology must have seen someting to say ON. xx
Hi Ziola
Yes I have been under my GP for chronic back pain for years now, used to be all lower but is now slowly creeping further up my back and into my neck - I just didnāt push my symptoms cos I thought Iām already on the max pain relief what more can they do?
I also saw them for weird teeth grinding and jaw pain - they told me it was stress and anxiety so I sourced a second opinion from a dentist who could find no āstructuralā cause for my pain and wondered if it was autoimmune but it waxes and wanes and then goes away and flares up again!
Iāve had weird numbness and tingling in my limbs for ages as well as being a bit wobbly but I put it all down to nerve pain from my back and didnāt push it again because as quick as the symptoms appear they go away, but this time everything has flared up badly and it just seems a bit odd that the optic neuritis has been diagnosed around the same time as me having a bad flare of pain!
Thank you lovely. Iām hoping they take me seriously. My worry is cos opthos said weāll see you in four weeks my GP wonāt think it severe enough to refer me on x
Hi guys , been referred to neurology!
GP was lovely and didnāt dismiss the symptoms out of hand at all which I was worried about as have had that happen before!
So now the wait happens, having some bloods in the meantime while
I wait to see if itās any other deficiency! X
Thatās great news!
The only thing I would advise is donāt let them fob you off with vit deficiencies as my Dr did with me 2.5 years ago when I couldnāt feel my feet. Make sure you defo get the referral and chase if you need to.
For my 1st neuro appt I received the confirmation letter 8 days after the doc referred me and the actual appt was 4 months after that probs due to covid delays etc.
Its really positive that youāre moving forward with things xx
BRILLIANT NEWS. now the wait begins it can take a few months because of this covid, but to be honest you will be fine. back when i started i had to wait 8 months lol. so paid to see him in 2 days lol. best money i ever spent. now just enjoy xmas ok. xxx your on the road to a journey. xxx
Hi guys thank you all so much for your support and advice.
So my vit D levels have come back really low and theyāve started me on high dose vit d, however my GP has said this could make the diagnosis more likely and has made my referral more urgent which is good.
Wishing you all a merry and hopefully covid and flare free Christmas!
X
